CHD – Our Story – The Diagnosis

CHD – Our Story – The Diagnosis

The day after Rainbow arrived, I sat in my room blissfully unaware that my life was going to change forever.  It had already altered immensely in the 72 that preceded but things were about to get worse.

A lovely paediatric Doctor came to complete Rainbow’s baby check.  I was still waiting for hubby to come to visit with the children and assumed that this bit would all go to plan… given that we had had enough surprises.  When she announced that she could hear a murmur when listening to her heart I nodded and still suspected nothing, because murmurs don’t really mean a great deal anyway, do they?

Even when she said that she would arrange for an echocardiogram to be completed, I thought she was just being thorough.  Within 2 hours, Rainbow had been to Neo-Natal, had an echo and the diagnosis was being delivered to us… I stared vacantly as I struggled to understand.

Rainbow was diagnosed as having Tetralogy of Fallot.

ToF

All I really understood was that it meant Rainbow would need surgery, it was just a case of when.  I understood that there were 2 holes in her heart and a narrowing of an artery but I didn’t really get how serious it was.

I cried a lot that night.  Rainbow was put on transitional care with neonatal and required monitoring every couple of hours throughout the night.  It was a long and tiring night filled with worry of what the future would bring.

We were discharged from hospital the following day with a leaflet from the British Heart Foundation about Tetralogy of Fallot and an appointment with a paediatric cardiology specialist 2 days later.  We had 2 days of thinking and talking about the future.

Over the course of the two days, I questioned everything I did during pregnancy.  I criticised myself for everything.  I couldn’t understand why it was happening to us.  I was in the midst of the baby blues as well, which seemed to magnify everything by 1,000,000.

I questioned “Why us?”  Before my waters broke, I thought that Rainbow was going to be my ‘healing baby’; she was going to put right all the perceived wrongs with Comma.  At the time I felt that she had done the exact opposite.  She had complicated our lives further.

When Monday came, I was anxious and spent the morning crying.  I didn’t know what the actual outcome would be.  My Mum was coming along to the appointment with us, as well as her friend who specialises in foetal cardiology, so we had extra support.

Rainbow had an ECG and another echo.

The scan seemed to take forever, but the news at the end was fabulous.

She only has a Ventricular Septal Defect (VSD).  It is small to moderately sized at 6mm and due to it’s location in the more muscular part of the septum, they are fairly certain it will spontaneously close without the need for surgery.

VSD

Leaving that room, with the new diagnosis, I was over the moon.  The built up tension of the past 4 days dissipated as the relief flooded through me.

Receiving a diagnosis of Congenital Heart Disease is frightening and isolating… because people just don’t understand unless they, or someone they know, has experienced it!